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Policy ‘overload’ affecting end of life care provision


An overload of policy recommendations is making it harder for nurses and other health professionals in England to deliver quality end of life care, according to a new report.

Written by Sheffield Hallam University, the State of the Nations report looked at policy on terminal illness in all four UK nations. It found 76 different government publications relating to the subject had been published in England since 2004.

“There are a large number of strategy and guidance documents in circulation”

Julie Skilbeck

This compares to just nine in Wales, 25 in Scotland and 12 in Northern Ireland, according to the research, which was funded by the charity Marie Curie.

The sheer number of recommendations and amount of information makes it difficult for healthcare commissioners and providers to understand and implement best practice, the report suggested.

Julie Skilbeck, a senior lecturer at the university and expert in palliative care nursing, said: “England’s palliative and end of life care policies are key drivers for commissioning, planning and delivering services for people living with terminal illness.

“However, there are a large number of strategy and guidance documents in circulation,” she said.

“This profusion is making it extremely difficult for commissioners and practitioners to develop and implement services for people requiring end of life care,” she warned.

The report, which calls for one clear piece of over-arching guidance for England, said the same “excess of information” was true of Scotland “to some extent”.

Meanwhile, it also highlighted a lack of clarity on funding and budgets for end of life care.

“There has been little action to drive quality of choice”

Jane Collins

Its publication co-incides with the government’s response to the independent Review of Choice at the End of Life, which sets out a range of commitments and steps designed to improve services in England.

The Sheffield Hallam report also comes alongside a new analysis by Marie Curie that shows the proportion of deaths in England from conditions needing palliative care, including Alzheimer’s disease and dementia, are rising rapidly.

The analysis of mortality data from 2012 to 2014 found more than seven out of 10 people die from a condition that needs palliative care.

However, this could be as many as nine out of 10 if other conditions that may have contributed to a person’s death are taken into account.

“This new data show us the need for palliative care is continuing to increase as people die with more complex needs and conditions,” said Marie Curie chief executive Dr Jane Collins.

“However, the Sheffield Hallam report highlights there has been little action to drive quality of choice from the government, despite a wealth of announcements and documents aimed at tackling this crucial issue.”

In addition, the report noted that England, Scotland and Wales at least had up-to-date end of life care strategies with established goals, but suggested that this was not the case in Northern Ireland.

“It is fair to say that, despite an ongoing strategic programme of work to implement end of life care priorities, there is limited evidence of a current and overarching end of life care strategy in Northern Ireland,” it stated.


Readers' comments (8)

  • Interesting, well-reported and significant article.

    It would perhaps be useful if our foolish government and Dept of Health, you know, the ones who got rid of the Nursing Advisory posts to the Dept of Health, got a knowledgeable person, like one of those they've just got rid of, to assess these 76 govt publications and concentrate them into a single publication that might also be useful to Wales, Scotland and Northern Ireland, too; or are they too much influenced by advice from doctors?

    We are all going to come to the end of our lives one day. Almost all of us will need palliative care. It is therefore essential for each of us and for our surviving relatives and friends to have an experience that is as satisfying as possible in the circumstances. And of course, there is no excuse for CCGs and members of the House of Commons and the House of Lords to deliver anything less from the 7th richest nation in the world. Humane care is cost effective but cost-cutting short termism does nothing more than return the same political party to (undeserved) power.

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  • michael stone

    The problem is, in part, 'people keep getting it wrong' - so 'another 'policy' has to be explained'.

    End-of-Life is also a very tricky area, within which to 'achieve joined-up thinking and behaviour'.

    And - much as I frequently write 'there must be a way of explaining this more clearly and concisely' - it seems almost impossible to achieve that: the main reason, aside from often competing 'professional objectives', seems to be 'that professionals project their existing 'belief set' onto the guidance they read'.

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  • michael stone

    ANONYMOUS 7 JULY, 2016 2:02 PM

    Indeed. But I don't write about 'care' as in clinical things - I write about EoL decision-making, and I definitely have a grasp of that, which is not the same thing as 'care'. And I write about EoL from the different perspective of family carers:

    I would add, 'that the people who have died' would be the best-placed to inform us about the satisfactoriness or otherwise of 'clinical care during EoL' - but they cannot tell us. 'Watching and Experiencing' are two different things.

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  • michael stone

    It would be reasonable to assume that hospice nurses 'understand EoL Care' - so can anybody explain how the events described in this letter, which was in the letters section of the Times, fits with 'nurses are experts in EoL care', to me ?:


    As a recently retired GP I am aware of the Liverpool Care Pathway as the gold standard for end-of-life care of patients dying at home.

    As a recently bereaved husband I am also aware of the high standards of hospice-based palliative care. My wife was transferred from an oncology ward at our local hospital to our local hospice to enable us to maximise her remaining days in a more relaxed and appropriate environment.

    We discussed our hopes for the admission with the duty doctor for more than an hour, after which my wife was visibly exhausted. I returned home briefly to shower and change, having slept in a chair at my wife's bedside overnight.

    On my return my wife was heavily sedated and unable to converse. I found that the nursing staff had administered strong pain relief and sedation by injection to facilitate nursing care and without prior discussion. My wife never regained her previous level of consciousness and passed away peacefully with her family at her bedside three days later.

    As an ex-professional I recognise the important impact of the Liverpool Care Pathway in improving the care of the dying patient. However, its application must take note of the fully informed wishes of close relatives, many of whom have been nursing their seriously ill relatives for some time at home in difficult circumstances.

    I implore hospital and hospice staff and primary care practitioners to involve patients and relatives throughout each step in the pathway, thus avoiding the inevitable deep disappointment and anger which may ensue from its unilateral application. As with every branch of medical practice good communication is essential.

    Keith Price (GP ret, York) The Times page 35 Friday November 9 2012 Letters Section

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  • michael stone

    QUESTION - has NT been very naughty, and removed a comment which originally appeared directly after my 7 JULY, 2016 10:26 AM comment, which told me that 'you know nothing - go away', and to which my 7 JULY, 2016 2:24 PM comment was in response, WITHOUT LEAVING A 'Comment removed' place marker ?!

    Anyway, further to my response to that removed comment. Why should I value an anonymous comment on NT, to the effect that 'you have no idea what you are writing about', when the e-mails I get from the National Clinical Director for End of Life Care, tell me that I do understand what I'm commenting about ?

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  • Nursing Times

    Hi Michael,

    There has been an increase in what we would describe as bullying comments on the site recently. We are therefore monitoring comments more stringently and simply removing anything that is clearly offensive.

    Where possible we're trying not to disrupt the flow of debate but sometimes this is unavoidable.

    Where a comment may by construed as offensive, but this was perhaps not the author's intention, we are including a link to terms and conditions to explain our decision to remove the comment. However the comment you refer to was a clear breach of our terms and conditions and we are confident the author knows this.

    Thank you for commenting!
    Nursing Times

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  • michael stone

    Thank you NT, I felt reasonably sure that would be your position.

    It is a reasonable position - you clearly cannot be unquestioningly tolerant of abuse - but I'm old, male, and involved in a debate with 'the NHS' and from my personal perspective I'm biased because 'some nurses take umbrage when a layman dares to stick his nose in' is useful for me [in the context of 'we all need to be talking together].

    I'm also not very 'empathic' (most nurses are, I think, much more empathic than I am) and quite 'nerdy and analytical' - it 'irritates me' if I post a comment which addresses an earlier comment, then I come back and find that my comment is still there, pointing at something which has disappeared.

    I didn't honestly think I'd persuade you to stop removing abusive comments - your position is understandable.

    Thanks for getting back to me on this, Mike.

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  • Dear Michael,
    Bullying is endemic within the NHS and most of the Public Sector and goes on top to bottom. It took me years to understand why my Nursing Staff found it difficult to discuss management matters and only seemed to relate to a dictatorial style.
    Unfortunately there are Nurses about who practice the old style management, mainly those who haven't the confidence or patience to do other wise.
    May I say that in general I find your style very thorough and generally well informed if somewhat lengthy.
    I am sure that there are far more Nurses that actually appreciate your comments and learn from them then are genuinely offended.
    Please keep up the good work, your approach is a breath of fresh air, please don,t let the knockers blow it into a storm.

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